As most of you know we've been on a question to determine what all is going on with Colin in terms of possibly Autism. Certain signs were starting to surface, as new ones have developed, all pointing me in the direction of my intuition once again screaming inside me to say "GET HIM CHECKED OUT, DON'T TAKE NOW FOR AN ANSWER!!" Quite a few others expressed concern in his behavior but also behavioral changes.
The first lady I brought him to saw him for three sessions for which we had to pay out of pocket for since insurance didn't cover for him to get screened for Autism. They rejected the insurance claim no matter how we tried to send it with what ever lingo. We could only see insurance approved locations which was very basic services nothing in terms of diagnosing that we needed specially a specialized Psychiatrist that could diagnose him. Also, IEP wasn't covered in our school district for Pre-k aged kids only Kindergarden since they don't even cater specialized services even to special needs kids.
We live in one of the top districts and honestly this part just floors me after the type of funding this school receives. It's devastating to me really. If he didn't have these conditions he could get in with out a problem. Many Pre-k have actually declined his ability to attend because "he's too big of a liability" this little guy? He's the most sweetest, happiest child you might know. He's brilliant, just needs the special touch of a really good teacher or two with the proper patience and technique to help him excel.
On back to the original Psychiatrist we were seeing. She ended up being a frustration. We initially saw her to help with his anxiety due to Achromatopsia [day blindness due to low cone/rod cells in the retina makes him see nothing and go completely blind or see white/black, plus he can't figure out all of his colors well.] It was founded that he doesn't have anxiety from that. She is seeing another girl who has this same condition around the similar age who has extreme anxiety thinking her mom has abandoned her. He will keep on walking like there is nothing wrong and perhaps that's just because this light condition is the norm for him. However, it goes back to being a baby. He never had separation anxiety vs. my other boys. Very easy going, hardly cried, very easy to take care of, and loved to cuddle [touch soothes him much].
She didn't want to diagnose him with Autism. She also questioned it because he showed signs but didn't want to diagnose him until he showed more true signs like by the age of 6-7. I didn't buy it as many kids at the age of 18 months can even get diagnosed. I pushed on for answer and needing a diagnosis. She parted ways offering me to call the Legacy hospital in Oregon. However, our insurance won't approve it nor will they even see us for at least 6 months with private pay since they're that backed up! Her reasoning for him spinning in circles is that many girls at the park do it all the time. I normally don't like to speak negatively of what others say, but this is a serious situation and his spinning isn't just something 'cute' he does, nor is he a girl with a dress. I was a girl with a dress and know this isn't the same. Looking on..
There was a few recommendations. Many phone calls made. Tons of online research. It all lead me to a requirement that they had to have experience either first hand or both working with kids who have Autism. There was a lady in Portland I found who has had like 12 years of running her own Autism clinic, has a special needs child herself, and has seen and interacted with kids with Autism for years. She was very informative over the phone right away, prompting many questions as I juggled Colin with his outburst over the phone towards Braeten [he doesn't want him to touch the iPad, ever.], understanding and showed honest empathy towards my situation. I could tell there was far more depth to what she does and decided to pursue her as his new Psychiatrist to get answers. Things had been changing and answers needed to happen.
She saw Colin for 1/2 hour play during the first session while asking me questions during the beginning of the session. She gave me a questionnaire to fill out at the end that was only 2 pages but told me we'd complete the rest over the phone for a 1 hour consultation. That way we don't have to physically come back and can just complete it over the phone. After 5 hours of Biology at school, I arrived home for food only to spend that full hour speaking with her over the phone about his quirky ways and changes, returning back to school to complete 2 1/2 hours of english in the evening. Not to mention eye exams at Casey Eye Institute in the morning for Colin and Braeten. That day was intense! That all was followed up by the final session she had with him on this recent Saturday to make sure of certain things from him.
When we showed up for this session she handed me more paper work to complete which was around a 2-4 page questionnaire with some new questions. During this time she went to the main room to 'play' with Colin. Since he's never had separation anxiety he left with out a problem not even asking where I went and rather excited to play with this fun lady again. She read him a few stories with 2 being logical and 2 other being more in an emotional story form. She said like clock work he clung to her during the logical stories but emotional stories he went off playing 'tuning out' the story and checking out the toys and rambling off about their name, info about them, etc. she kept on reading but he didn't engage in the story at all vs. the logical story. She said he seems to be aware of his emotions which is why she puts him as a mild aspergers right now.
When she was completed with him during this testing play time she called me back. She started into telling me this situation has rather perplexed her. Wow, does this sound familiar with Casey Eye on his mystery 'day blindness' that even our original pediatrician thought I was nuts for saying[seriously, that's why he's no longer their Dr!]!! He is showing signs of Aspergers but there is a few degrees that aren't typically characteristics of Aspergers but that's not to say that he doesn't have it she says he does but not as extreme. She even said what ever I've been doing with him emotionally, verbally, and otherwise to keep doing it because he's the most high functioning Aspergers child she's seen.
However. There is some questions she has about his diagnosis in terms of if he has Aspergers or possibly this extremely rare [1:100,000 kids] form of Autism called Childhood Disintergrative Disorder. Where in the period of their first 10 years of life they actually regress and go into what they refer to as Classic Autism. Where they have no bowel controls, speech is gone, etc. They literally are sucked into that 'world' of Autism due to brain damage. She said there is certain key things we need to be aware of that she'd cover in our need final IEP overview from her final diagnosis. When or if these signs show up that we'd need to see a Neurologist to determine if that is really going on. However, the more I've thought about it the more I just want to skip to the Neurologist now and see if insurance will approve it. Do I really want to wait these precious years of his childhood trying to determine if he's going to go into this complete fog for the rest of his life with no more giggles, words, jumping for joy of happiness, smiles, oh my god..I want answers! Now. I already have to wait on pins and needles about other problems that happen with Stickler Syndrome now to think about 'waiting it out' to see if he shows up signs of this CDD to? No, I want to know if he has it now. If he does, I want to enjoy this time with him to the fullest. I want him to enjoy it to the fullest. He deserves it.
It is really hard to see his speech get worse. This is one of the signs she has mentioned as to why she thinks he has it. He spoke fluent and highly articulate even more so than his brothers. However, around 3 years his speech dropped off to bad pronunciation of vowels and other letters. For example his brothers name Logan was pronounced Woden. At the age of 4 years he now stutters really bad and will go in and out of a conversation with out maintaining it like he used to. He never used to stutter or speak this way. You can work with him on correcting it and it doesn't work. Not only that, it wasn't until his Gluten free diet did he not have a solid poop ever. After 2 weeks on a gluten free diet he did. It was a shock. He still complains about his stomach hurting in the evenings or being hungry and hurting or even really thirsty. They're going to check food allergies but the Pediatrician wants to rule that out to determine if there is anything else going on instead. He has looked at peoples eyes less now.
Here is some information on it: http://en.wikipedia.org/wiki/Childhood_disintegrative_disorder
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